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telboy47

Knowledge is Power

Hi Everyone,
I am a relative Newbie to this great forum, and my wife's background history is there to see on clicking on my link (I hope!).
Having gone for the 'hat-trick' (which we really didn't want to achieve), we have to face the consequences, like many, in respect of what lies ahead, and in what form.
Our initial watchword is 'Positiveness'! Laugh in the face of adversity and keep smiling, irrespective of how bad the day is.
Currently awaiting my wife's DPD Enzyme results, prior to meeting with our oncologist (on a season ticket appointment), I recall a conversation that we had when, after the 4th round of Oxaliplatin/5FU, and my wife withdrawing from the regime through toxicity and drastic side effects (you name it, she had it!). I posed the question having done extensive medical research reading from all and every source, "What, in percentage terms, does Oxa/5FU have on the whole recovery picture for bowel cancer?" The response was quite surprising "70% of success was down to the surgeon, and having both Oxa/5FU in a course of treatment adds a 10% improvement on the chances that the cancer does not return within 5 years; removing one of the chemo elements, reduces that to 5%". My wife ended the regime after the 4th session, otherwise she felt that she would be dead by last August!
Now we face, what appears to be Mets in the lungs of 7 lesions, and of the same strain as that of the bowel cancer. Hence the DPD Enzyme test.
Admittedly, not everyone knows about this test, but if you suffer from bowel cancer, and Oxa/5FU appears to be the treatment of choice, then please ask for this test, and please push until you get one. It is not the be all and end all of pre-determined solutions, as other enzymes can come into play, but it is a great start.
I also appreciate that the US have more research data to hand, but in essence, the drastic effects of Oxa/5FU and the usefulness of DPD testing, has been known for about 30 years!!!
I am not trying to teach my mother to suck eggs, but please ask the pertinent questions when you have your appointments.............it is your life, and your body, and please remember, you have plenty of wonderful people on your side who post on this site who have been there, done it and indeed, got the tee shirt!!! Keep well and keep positive :x::x:

Elmac

So sorry @telboy47 to hear of your wife's lung mets. My nephew in Australia has cancer of the stomach and upper small bowel - discovered the cancer last May but they can't find the primary source, and he has been on chemo since then but he has told us using cannabis has helped him enormously - he even mixes it through his butter - and said without it he would have given up - but he has a 13 year old son to consider. I know that you can get Cannabis oil through the health food shops, but my nephew is now growing his own and distilling the oil himself as it is much more potent!

I had my right hemicolonectomy 3 weeks ago and am still waiting the results of the biopsies - hopefully will know next Wednesday when they have the weekly MDT meeting. It is the waiting game that is the hardest on this cancer journey we take.

Elaine

Baxter2

Hi @telboy47

I'm sorry to read of your wife's diagnosis. This must be so difficult for her and you and the family too of course.

I was interested to read about the DPD test as I don't think I've heard of it. I had to google it to find out about it! I'm guessing there will be an alternative chemo that your wife can have to tackle the cancer? Is she suitable for a biologic/monoclonal antibody such as Cetuximab?

Sending love and very best wishes,

K💙💜💛💚❤️
P.s. welcome to the forum!

GD62

Hello @Elmac and @tellboy47

Thanks for your information very interesting. I did respond well to capox but my oncologist advised me that the adjuvant pot op chemotherapy did not affect or improve the 5 year survival rate. So a bit confused how that applies...

Thanks :)

charleyb

@telboy47 you are so right knowledge is power, well done you for researching so much, and for asking questions. i wish you and your wife luck going forward with treatment for lung mets, do you know what the plan of attack is? Like @Baxter2 says is she eligible for cetuximab? it did wonders for my husband.

:x::x::x:

telboy47

Hi Elmac, Baxter2 and GD62.
Many thanks indeed for your input and yes, the waiting game can sometimes become unbearable! We, on the receiving end, always seem to have a higher priority in the deliverance of results, information or indeed anything that helps in this dreadful process.

I suppose when it comes down to it, every individual case is different, and percentages must align to the severity of the illness and degree of surgical intervention that is needed in each case.

My our part at this end, my wife has her appointment with the oncologist on 16th May, and I am sure that this is going to be an interesting exchange..........in fact I know it!

On our list of questions, is 1. Where are the lung lesions situated ie inside, outside, lobes affected, and how big. 2. The results of the DPD blood test. 3. What about the levels of Thyamine and Uracin (I believe this is correct). 4 How about Microwave Ablation (MWA) and/or Radio Frequency Ablation which I believe is determined by the size of the lesions. 5. And most pertinent, if Oxa/5FU is on the cards, can we please have MWA/RFA, instead!!!! Time will well.
And whilst writing this thread charleyb has responded. I will certainly bear in mind the cetuximab which Baxter2 also mentions, and trust the above will answer your kind question charleyb on my plan of attack!!! In fact I will make Cetuximab No 6 on my list. Every battle must have a plan of attack!

Thank you all for your kind thoughts and let us hope that all of us come through these dark days with positiveness and bundles of hope. This forum helps enormously, as Agent Mulder would say on 'The X Files'.... "We are not alone"! :x::x::x:

Tiffany

@Elmac

Hi all. I just thought that I better just nip in quickly to put something straight. Cannabis Oil is not legal in this country - only CBD oil which is different. It is very confusing so I have posted an official statement from Beating Bowel Cancer to help everyone understand what you can and cannot legally buy in the UK.

It is important to understand the difference between cannabis oil and CBD oil. CBD oil contains minimal amounts of the psychoactive tetrahydrocannabinol (THC). Concentrations of THC are far higher in cannabis oil, which is not legal in the UK.

The charity has recently sought an opinion from the Medicines and Healthcare products Regulatory Agency in regard to cannabidiol (CBD) oil, the key points of which are as follows:
The main point to consider is that CBD oil products being sold to treat illnesses are considered to be medicines and as such should be licensed as medicines to make sure they meet the appropriate manufacturing standards.

Currently in the UK there is only one licensed product containing CBD oil, Sativex, which is licensed for the treatment of MS in adults.

There have been a number of clinical trials which demonstrate that CBD has a therapeutic effect, particularly in the treatment of severe epilepsy.

MHRA is working to ensure products containing CBD, used for a medicinal purpose, which can be classified as medicines, satisfy the legal requirements of the Human Medicines Regulations 2012.

None of the above impacts on the legal status of cannabis on the UK: cannabis is a Class B drug and penalties are in force for possession, supply and distribution. This includes cannabis oil.

Essentially, therapeutic benefit cannot be claimed for any CBD oil product unless it is licensed by the MHRA. CBD oil products are now available in some health food stores and are legal because the concentration of the psychoactive tetrahydrocannabinol is very low. These products are marketed as food supplements and not medicines and do not make therapeutic claims.

There are reported benefits of using CBD oil but (other than the clinical trials referenced by the MHRA) these are largely anecdotal. As ever, the charity's position is that if you are considering using any alternative/complementary therapy alongside your prescribed treatment, you must consult with your medical team first.

telboy47

Hi Guys,
Apologies, but I have been remiss in my update on my wife's consultation on 16 May; time seems to move at such a speed! Well, the DPD enzyme test was still awaiting a result from London, but in view of the latest it really doesn't matter in my wife's case. Chemo is now out of the question in view of the toxic result of what happened last time out. We discussed MWA and RFA, but, having been shown the location of the multiple tumours currently invading the lung tissue, then the majority show a prevalence of taking up a position nearest to the supplying blood vessels. I would imagine that any attempt in the future to ablate these lesions may result in a heavy bleed...............not without it's drastic consequences!
Therefore, we now await a full body scan on 4th June and another consultation with the oncologist in respect of prognosis and timescale. Watch this space!!!!
As an aside, and moving on in respect of Oxaliplatin/5FU chemotherapy, you may be interested to learn that although a DPD enzyme can be purchased privately for about £1900, the brilliant NHS Cancer Nurse in charge of my wife's treatment has obtained the test for £50!
Please, please, please, if you are scheduled to have Oxaliplatin/5FU, ask for a DPD Enzyme test
in preparation for this treatment. This enzyme, produced within your body, protects your healthy cells against the infiltration of the chemicals that invade your body through this specific chemotherapy treatment. Keep well and keep positive, and 'May the Force be with you' :x::x::x: